I am saying Hi and seeing if anyone is available to chat and answer a few questions please.
I am 44 and was diagnosed with severe heart failure in October last year.
I’m in a lot of medication which has strengthened the pumping function and ejection fraction from 40% to 65%. The angiogram showed my arteries to be clear.
the consultant told me he’s thrilled with my improvement and I should be very happy that my heart is functioning much better and responding to medication.
I am very grateful but I’m so confused about why this has happened . I’ve put on almost two stone since starting the meds, j feel so weak and dizzy and short of breath some days and very unclear what the future holds.
The GP says there is nothing more they can do for me and I’m finding this hard to process and accept.
So sorry to vent to you but I thought you might be able to share some tips and experience.
thankyou!
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Freya11
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I can’t answer your questions but just wanted to welcome you. I only arrived here this week but have been warmly welcomed and received great advice. I’m sure you will too 🙂
I’m sorry to hear about your recent diagnosis of heart failure.
I’m glad to hear that the medication has been working and you are well back within a really good ejection fraction range.
I personally don’t have heart failure however, many do and medications can make significant improvements whilst causing unpleasant side effects which seems to be what you’re experiencing.
I will tag Lezzers who is knowledgeable on heart failure, and can perhaps offer some advice on the medications and it’s side effects.
It might also be useful to list the medications you’re on so people can offer their experiences with these accordingly.
Just know that you’re not alone in this and there are many others on a similar journey to you.
I’ve recently had a hysterectomy and prolapse repair and started HRT a few months ago. So a lot going on at the same time.
Has anybody had fast weight gain and can give advice about diet changes please?
I am really trying to stay active but a mixture of recovering and feeling so tired and weak, I feel like I’m fighting a losing battle and it’s really making me feel low and like I don’t want to see people.
Ramipril is one of my BP meds and one of the main side effects of it is a dry cough.
I have a friend who is also on it and her dry cough is there all the time, but with me it comes and goes. I recall having the cough for a while when I started the med years ago but now i find that I get the cough again if I have a chill, a cold, a dental issue or a throat infection and that it then takes ages and ages for the cough to dissappear again - but it does eventually go Also if I get really anxious then it kicks the dry cough off too.
Last Nov I was put on 2.5mg Bisoprolol for a Heart Arrithymia which is still under investigation. I've found with this that my mouth is extremely dry and that if I'm up & doing things - walking, shopping etc. that I need to have water with me just to have a mouthful.in order to feel comfortable.
Looking at other posts on the forum Bisoprolol can also cause tiredness and dizziness .. which I also suffer with .... however your Heart Failure, and my Aemrrithymia .... will cause dizziness and tiredness too ... so it's a bit difficult to say if it's caused by the med or not.
I think with your cough & throat issues that it might be worth you discussing the following with your GP
(1).if the Ramipril could be stopped for a different medication which doesn't cause a cough.
(2) to check that the HR Therapy Meds aren't causing you any allergy issues
(3) to check that the HR Meds are not contra-indicated with your Ramilpril and Bisoprolol. This important especially with holistic or herbal meds that aren't a prescription med.
(4) if the meds themselves and / or the recent weight addition might be causing you some Gerd (acid reflux) issues & what you might do about this
Only other suggestions are...
(1).please check with GP if you have swollen ankles & feet as the Bisoprolol says to do this.
(2) do what you can in terms of movement, but don't over do it
(3).be sensible in dividing the amount of energy you have for the tasks you need to get done .... other posts on the forum refer to 'spoons of energy & how you use them'
(4) let some of the un-important tasks with for the next day / when you have a bit more energy
(5) try not to get too anxious and/ or stressed
(6) try to relax
(7) be careful leaning over, bending down & getting up again if you are dizzy
(8) try slghtly reducing your calorie intake as you are not expending as much energy due to movement etc being slowed down
Do read through other posts & replys as some will give you information and experiences on (2) to (6) above. [.You may come across some disputes as unfortunately we have suffered some trolling recently & a few recent posts / replys got a little yucky. Please ignor these. And please do report any bullying if it happens to you. Fortunately the majority of the forum are lovely.].
Also I think that Ramipril needs regular blood test for kidney function (but might be confusing this with one of my other BP meds).
I believe this is another side effect of bisoprolol. I would recommend making a list of all the side effects you’re experiencing and go to your gp and share this information with them too so they might be able to offer an alternative that may be more tolerable for your body.
hi Freya 11 if you are on ramaprill that is what is causing the cough it happened to me ,the doctor changed mine for a much better medication called entresto which has helped amazingly and the cough has gone thankfully.. all the best 👍
I hope they didn't use mesh for your prolapse repair. It can cause horrific problems. I had my bladder stitched back to spinal ligaments after a hysterectomy many years ago ( Without permission) and have ended up in a wheelchair and 30 years of chronic pain. That's a huge improvement in your heart function. I'd be thrilled. Your present symptoms could be side effects of your tablets. Have you spoken to your GP about them? Ramipril is well known for causing a persistent cough.
Hi Freya11Im very sorry that you have been diagnosed with heart failure (HF) especially at such a young age. Great to hear your EF has improved so much though I am surprised you was classed as severe with an EF of 40, I can only assume you were very symptomatic as severe is usually 30 or under. But an EF of 65 is a massive improvement as that's well into normal range. However, it's how symptomatic you are that matters more than your EF.
Weight gain is a common complaint with HF, unfortunately a combination of meds & symptoms can slow you down and it's always easier to gain weight than it is too lose it. Can you speak to your medical team about a diet that is suitable for you & your condition, not all 'supposedly'' healthy diets work for everyone, i.e. my husband could never have a plant based diet as it's high in potassium and that could be harmful to him.
Ramipril is notorious for causing a cough, speak to your medical team about this, if it is deemed to be a 'pril' cough there are other meds they could try you on.
Do you keep an eye on your blood pressure? If you're not on fluid restriction do you ensure you take enough fluids to keep hydrated? Dehydration can cause low blood pressure which can cause cause dizziness, tiredness etc
You've had a lot going on health wise so it's not surprising you're whacked out, I don't know anything about HRT but your heart meds are not particularly dosage, maybe your Dr could have a look at tweaking it a bit.
Do you have a HF nurse? Under NICE guidelines if you've had a diagnosis of HF then you should be referred to a HF nurse, if they're available in your area. The nurse will be able to monitor you until you're stable & will tell you how to self monitor etc. Are you still under a cardiologist? If so the nurse will liaise with him/her to get you optimised on meds that work for you. But I would say at the moment your heart is being very well protected & working very effectively in pushing good oxygenated blood around your body which keeps your organs in good working order.
Hope this helps in some way & thanks to @tos92 for tagging me in to your post.
Thankyou for sharing that, very helpful to know that I’m it’s not just me coughing away. I dont find it easy to get a GP appointment and when I raised by concerns with the nurse in a recent blood pressure review, she said she wanted me to be seen as my blood pressure was low snd I was a bit disoriented. She tried to phone for advice and then left the room to speak to a Dr, she came back in the room told me she was very sorry I was suffering so much but said there was nothing more that could be done for me.
The consultant said my mri showed no sign of myocardiomyopathy and the heart failure had been reversed. There was no reason why I couldn’t live a normal life, return to my degree (training to be an OT) but my body is telling me different and I am desperately seeking a solution and maybe I need to accept that this is the new normal for me but I’m struggling to come to terms with it.
That's great news that you haven't got HF, perhaps its a case of you're now over whatever caused your EF to go low (usually a virus) but you've been left with some side effects.I would get your own blood pressure monitor & keep a log of your readings so that you can show your GP. You don't need to spend a fortune on the monitor, have a word with your local pharmacist, they will advise on this. Do you know what your blood pressure was when the nurse took it?
Are you drinking enough fluids to keep you hydrated?
If your breathing is an issue ask your GP if you could have a lung function test, I think that's a fairly simple test that they can do in surgery, though I'm happy to be corrected on that.
Finally if you're not happy with your GP ask to be seen by another Dr. Another option is to contact your cardiologist for advice.
One question I would ask is why are you taking this medication if you don't have a heart condition & your BP is low,
thanks for your insightful input much appreciated.
I have been told that I will live with heart failure and meds all my life. Adjusting to side effects and managing symptoms that affect your daily living and managing your responsibilities and changes in relationships with loved ones is always hard no matter what the label is.
Peace be with you and Thankyou again for your time you have invested in giving me support at a difficult time while you have your own challenges.
The Pumping Marvellous Foundation is a great resource for info & advice about heart failure. I hope this helps you understand your condition, symptoms, medication etc. Your GP is the one who should be referring you to the HF nurses. I would Google HF nurses in your area and ask them how your GP can refer you. I think there might be something in the link below that tells you about this. Unfortunately GP's are not always on the ball when it comes to HF sadly!
Have you been referred to cardio rehab, if not do ask, this is a NHS programme for all us hearties who have suffered a heart event.
They normally last over 8 weeks and in my local trust's case you get assessed on a one to one basis with a rehab nurse in regards to your physical health and what exercises will be best for you and help in regards to diet etc.
I am always championing rehab because it made a huge difference to me, for example when I came out of hospital I could walk 50 yards with a stick, and now can do 2k on the treadmill and about 11k on the bike when at the gym. Yes I get tired and have to have rest days but I make the most of it. What I am trying to say you will improve, unfortunately it does take time and you can't fully reverse heart failure.
In regards to eating BHF have some great recipes you can use, they can be found at the following link there is plenty of choice.
I am still waiting to see a heart consult in the NHS, I’ve not got a team or rehab programme,
I had an echocardiogram 1 week before a planned surgery for something else. That 1 side of my heart was not moving snd the other side was weak. They decided it was safe to operate but couldn’t get me into a heart consultant that week even with an urgent referral. We paid for me to be seen privately and I was referred for an urgent angiogram and put on about 5 different meds until they established my arteries were clear.
I have been unable to access any NHS services as I was seen privately. Although I can’t afford to keep paying for the private appointments, there are currently no cardiology appointments available at my hospital. I’m on a waiting list to be seen.
The BHF helpline has told me I’m entitled to be referred to a community heart failure support service to monitor weight, fluids, side effects, meds etc. I called the team myself and they need a referral first. My GP won’t refer me as it needs to be done by a cardiologist, I just feel like I’m going around in circles. I don’t like to be pushy as I know so many people are affected and people are doing their best.
I do have some low days as I have 3 kids and it’s hard.
Morning Freya, sorry to hear you have had not ben able to get an appointment with a cardiologist or rehab yet.
From looking at the BHF site it does appear that your doctor can or nurse can recommend heart rehab (bhf.org.uk/informationsuppo... - this is backed up by the NHS's own website who use this link).
because this isn't what happened to me it may be worth checking with the BHF nurses as how you go about it and explain that your doctor won't because it says only a cardiologist can (hopefully they will confirm that is incorrect).
I know how hard it can be and that you will have low days particularly if you can't get the help you really need.
Hi Freya Unfortunately lists and waiting time are very long in some areas, but do chase Cardiology after a while if you haven't heard anything as sometimes that can work. You could also ask if there's a list so that you might get called if there's a cancellation.
Welcome to the forum, sorry to hear that you’re having a difficult time.
I’m of similar age to you, I’m in my mid 30s and have dilated cardiomyopathy and heart failure. On diagnosis back in January 2021, my ef was 30 something % (can’t remember now as it feels like a lifetime ago!
I’ve had a bit of a rollercoaster ride since then with one thing and another but my last echo showed my ef stationary around 45% (same as it had been the previous time it was checked).
The main reason I was put on medication was to bring my heart rate down but I couldn’t tolerate metoprolol and enalapril because they both brought my blood pressure down too and it was making me feel sick, dizzy and very faint, especially in warm weather.
I was then put on dapagliflozin and ivabradine but my gp believes I’m allergic to dapagliflozin so I was taken off it.
Now I just take ivabradine and I’m still symptomatic most days but so far, I haven’t had any of my pre-syncope episodes since stopping dapa and my chest pain and tightness has improved.
If you have put on 2 stone in weight, is it possible that it could be related to water retention?
What I would say is don’t make any changes without consulting a medical professional first. Even with the best of intentions, none of us are experts and it’s important that you share everything you’re experiencing with your gp as they might be able to tweak or change your medication to something that suits you better.
I noticed that you mentioned you’ve recently had surgery and this may have played a part in the weight gain too; being less active can be surprising how quickly you can pick up some extra pounds.
Be patient with yourself, it will all come especially now your ef is so improved.
I believe the bisoprolol you mentioned taking can really impact on energy levels so again that’s why I would encourage you to speak with your gp/cardiologist to explore the possibility of an alternative.
Sorry to hear your problems but welcome to the forum. The majority of people on hear are really nice and helpful. Sorry I can't help with your problem. xx
Welcome to the site Freya i hope to see your posts regularly i have heart failure myself and yes it did cause me dizziness and fatigue but i had a preserved ejection fraction that was last year..
Two months later i was diagnosed with atrial fibrillation and pneumonia at the same time the dizziness just got worse..
Trying to do things a little slower helps and regularly checking your weight and blood pressure and regular check ins with your GP is important..
Hi Freya and welcome I know nothing about heart failure but agree with Tos92 about the side effects of medication so maybe you could look into that. I have found this forum very supportive since joining and hope you will also there are some lovely people on here who I’m sure will be able to give you the advise you need. Good luck 😊X
Thank you to everyone who replied to this thread, you certainly have given me for food for thought and made me feel less isolated.
I am sorry if my terminology/tone if it caused anyone hurt, I’m new to heart health and health forums.
Wishing you all well, today is a new day given to me. I Will be grateful and make the most of it.
God Bless you
Sorry to hear of your problem. There is alot of good advice from people on here and have a real world experience of the issues. The only piece of advice I can give is that heart failure should be re named or changed to say that the heart has not failed it has become less efficient. Your ejection fraction has definitely improved. Depending on where you read it, anything above 50% is classed as normal so the higher the percentage the better. Ef is basically the percentage of blood that leaves the heart to the body, there will always be a percentage of blood that is left in the heart. So by improving the contractions of the heart muscles, which it what the medication does, the more blood can be pushed out. However the issue is that the medications can improve one problem and then cause side effects which is the biggest problem. Also anxiety can replicate problems and you end up in this vicious cycle of not knowing what is causing what problem. I am still on a journey and it does take it out of you. My condition is congenital so my heart was manufactured with a fault. I emphasis with all you have said. But remember it can and will be a frustrating time so try not to be hard on yourself, Especially with the way the nhs is at present. So you have to get as much information together to try and push your explanation of why you feel the way you feel. Do Home blood pressure readings have Blood tests. Just to make sure the body is balanced with its internal chemicals. I hope you get some peace and it all works out.
I have read some frightening statements and statistics when I’ve researched heart failure. It does make you feel anxious snd question the reassurance the consultant has given me.
I have to admit I am a pain to myself always looking stuff up. It is not a good thing. But we are all curious because we want to get fixed. You do have to have faith in the medical profession but it does become a long process. But you just have to keep going baby steps, push a bit more and then stop and go again. But if you are on medication for the heart make sure you stay hydrated, drink water mainly. I was told 1.5 litres a day. It all helps.
Yes it does effect the mind to go to dark place's. I don't have heart failure, however with my congenital issue my right ventrical is not working well. So there is a weakness, but this weakness I was born with. It is causing the right side of the heart to have a low ejection fraction. But left side has an ejection fraction of 51%. May have improved since my last echo but I never got a report on that. So technically I have an inefficient right side but is not causing heart failure symptoms. All a bit above my head, but I have to go along with the experts.
Hi Freya you've had some really good news on your ejection fraction.The tablets your on are slowing you down hence your unable to do that much it takes time to get used to them.Try move a little bit more each day eat plenty of fruit you will get there.When I started on the tablets I used to get out of bed and then fall asleep in the armchair after I had taken them.Now I'm up early and doing 40 miles a week on my bike and as much walking as possible.Goodluck Freya you can do it.👍
So sorry to hear about that. Unfortunately, I can offer no advice because I know nothing about your diagnosis. All I can say is that, since joining this forum only recently, I have found the people to be incredibly supportive and helpful. I have discovered so much that I had no idea about despite being diagnosed with AF four years ago. Good luck to you
Make sure you report your side effects to your doctor as alternatives can be found. I could not tolerate bisoprolol and I was only on half the dosage you are on. The fatigue was overwhelming not to mention weight gain, tinnitus and back pain. This all disappeared with discontinuation of the drug.
Morning, sorry to hear about your health. Having said that, your ejection fraction is good and clearly responded to medication. I think most of us find that fatigue comes with our conditions and / or medication. Has your cardiologist explained why you are breathless when you have a very good ejection fraction? Hope you feel better soon and the medication continues it’s amazing work.
Welcome to the site. I’m sorry you’re going through so much.
I have heart failure and my EF is 23%. The meds I believe does make you tired and sometimes lower your blood pressure too much. They like to keep the blood pressure low so the heart don’t have so much work to do. Around your age I first got diagnosed but I have dilated cardiomyopathy. I am now 62. I had that down feeling too because my children were teenagers. I didn’t see myself reaching the age I am now.
I had an hysterectomy in my 40s just after I got diagnosed, my ovaries were left so I didn’t have HRT. having a big operation can affect you as well as the hormone change. Maybe once you’ve fully healed you can ask your Gp to refer you to a weight management programme and also ask if your Gp nurse can see you to check your weight and do your blood pressure until you see the cardiologist. Someone mention the lung test. I have those symptoms you mentioned sometimes and I have a lung issue diagnosed recently. Speak to your Gp write down what you have to say if you feel intimidated
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